Wednesday, December 31, 2008

Happy New Year

A New Year looms a mere hours away. We all look to the New Year with hope and optimism, hoping that the challenges we faced over the past year won't be repeated. While 2008 was filled with challenges for me, more than are even mentioned here on the blog, it WAS a good year. I learned a lot. I learned how strong MS is, but I learned that I am stronger. With each challenge that MS threw at me I learned new coping skills and how unimportant some things really are. I was also blessed to be married to my best friend and life partner. A man who is so special words couldn't begin to convey everything I feel. This is a man who has stood beside me through everything MS threw at me this year. It is a rare man OR woman who would do that. I don't know what I ever did to be blessed with such a man. For him I am truly thankful. I have wonderful friends that have stood by me, and some who have chosen to fall away. While I miss those who chose to fall away, I realize that they weren't friends to begin with. Adversity tends to make "fair weather friends" disappear. The positive is that adversity also tends to to bring new friends into your life as well. Friends you know will now be there through whatever curves life throws in my life, as I will be there for their challenges. I can't even begin to express my thankfulness for my family. Thank God for family. Where would we be without our families?

Monday, December 29, 2008

After all what IS a perfect day??

Today was a good day. My energy level stayed pretty high (for me) all day. If I hadn't had the stiff right shoulder and neck it would have been a perfect day! It's amazing how my definition of a "perfect day" has changed since MS entered my life. Previously, a perfect day would have been hitting the malls for an all day shopping excursion with a girlfriend or a day spent with my husband taking a long drive and stopping at the beach for a long walk. Now the "perfect day" is simply staying upright on my own two feet. What a difference MS makes. Shots, pills, infusions and "adaptive equipment" are now part of our daily lives. Thank goodness we have them all. I can't imagine where I'd be without the steroid infusions, the Rebif injections or the Neurontin. Not the mention the STS RX machine I use several times each day. I know that my pain level would be much worse than it is now. I rarely have any neuropathy in my legs and feet. In fact when i have tingling now I'm always surprised. If you haven't had a chance to watch the video on the blog, please do. It's very informative and explain how and why the machine and protocols work.

Our Skateboarding Queen

Petunia is a joy to have. You see her with he purple skateboard. She is starting to get the hang of it and isn't happy when she runs out of space in the family room. When that happens she looks at me ask if asking to move the wall in her way! She's also VERY verbal. If I correct her she has NO problem telling me EXACTLY how she feels about it. It's like having a toddler that goes to a teenager in 2 seconds! She's really a good girl though we will be glad when the puppy teeth are gone. They HURT! Oh, and no big problems related to the fall I took yesterday. A stiff neck and right shoulder. Nothing that some IBU won't take care of!

Sunday, December 28, 2008

A reminder not to get cocky...that was painful..and messy

Just when you think to yourself...HAH....I've got this thing (MS) back under control. Over the past few days I've noticed an increase in my fatigue level and balance issues (as we all know stress causes flareups and even though it was GOOD stress the holidays are still stressful). I use my wheelchair when I feel I need to but try to use the walker or feel around walls as much as possible. Well, today I decided (even being wobbly) in my infinite wisdom to go outside on the back patio on just my own two feet. NOT a wise decision. First, let me describe the backyard. We had a wonderful patio poured in June, but the yard is not landscaped. In other words, it's a mud pit. Anyway, I was out side with hubby and Petunia (who by the way is learning to skateboard) when all of a sudden, you guessed it the balance went. So of course, I'm trying to take steps to catch my balance (VERY unsuccessfully I may add). I end up going a&* over elbow off the patio and land flat on my back in a combination of frozen water and mud. It happened so fast my husband couldn't reach me in time. My glasses and everything else not zipped up or buttoned went flying. I recall just lying there, Petunia jumping on my stomach thinking I wanted to play. I don't remember getting up. The next thing I remember is kneeling on the patio, mud dripping off me everywhere and telling my husband to just leave me there. I'm not sure if that statement was made because I was afraid to move or I was being entertained by the shapes the mud made as it splattered on the patio. After about 5 minutes, I attempted to start moving body parts. One part at a time. Mark helped me up and walked me into the house (fortunately I don't have carpeting in the kitchen area), mud still dripping. The end result of my inability to stay in the chair when I need to be there is a bruised left wrist and ankle, stiff shoulders and a headache. I was lucky. My husband was gracious enough NOT to laugh. Lesson learned......don't be so cocky and when I need to be in the chair I need to accept it.

Saturday, December 27, 2008

New Video

Well, Christmas is now past and the New Year looms ahead. I wonder what 2009 will bring. 2008 sure had it's suprises. Both wonderful and terrible. I posted a new video on the blog. It's an explanation about the treatment's I receive and the machine I use. I'm the first woman talking on the video and my sister-in-law is the second woman. She's the wonderful lady who referred me to the clinic for treatment. I will forever be greatful for her! If you have any questions after you view the video feel free to post a comment and I'll answer your questions the best I can! I hope everyone had a wonderful Christmas!

Tuesday, December 23, 2008

Twas 2 days before Christmas......

and all through the house 1 creature was stirring and she wasn't a mouse....It was bloody me! I've been UP since 2:30 this morning. I really shouldn't complain. I went to bed around 10 and was asleep by 10:15. So I DID get a little over 4 hours of solid sleep. For a chronic insomniac that's a pretty rare occurrence. I usually sleep in fits. An hour here, 30 minutes there and toss and turn all night. (My poor husband can attest to that). I would have slept longer except that Princess Petunia figured out how to get through the gate that closed her off in the family room and visit me. Bounding at the side of the bed. Of course, my first thought can't be typed here. I figured I would find major damage somewhere. After all an 11 week old puppy who already weighs 21.7 pounds (we were in the vets yesterday to have Petunia treated for an allergic reaction. However, that's another blog and she's fine now), can easily bring a Christmas tree down. I got dressed (figuring I was up, why not) and began the room to room search. To my everlasting shock and amazement the ONLY thing she destroyed was one of Maggie's cat toys that hangs from the handle of the closet door. (I'm sure Maggie isn't happy about that). Now BOTH animals are sound asleep and I'm up. Drinking my EARLY morning coffee and actually enjoying the quiet time. I feel good. A little achy from the Rebif but not too bad. No muscle twitches or spasms, no funky aches and pains. I've noticed with the increased Neurontin dose my balance is more unsteady, but I'm sure it will resolve as my body adjusts to the new dosage. I'm walking more and more with the walker, but won't risk going out and about without the chair. My balance and fatigue levels are still too unpredictable. Well, I think I'm going to try to find something on TV other than infomercials. Type atcha later!

Monday, December 22, 2008

It's finally here...

Christmas week. Where did the time go? It seems there is so much to do at the last minute. Fortunately, all our gifts have been wrapped, shipped and sent on their way. Mark picked up a carrier for our Princess Petunia Her Royal Highness this morning. (Yes, she has already assumed her royal airs). The weather here has changed once again. It poured rain this morning. All the beautiful snow is just about gone :( It rained for a few hours and has now stopped. Now we wait to see if the temperature drops and snow comes tonight. I'm feeling pretty good. No more spasms since I started the increased dose of Neurontin. I just hope it works permanently. Tonight is shot night so I've already started taking the IBU. It seems all my days are measured in "It's shot not", or it's not. I'm following the research they are doing on the oral treatment. It goes to the FDA for approval next year. I can't wait until it's approved. Of course, it will also depend on the side effects of it. I can't imagine the side effects of it would be any worse than the Rebif side effects are for me.

Sunday, December 21, 2008

Medication adjustments

Went and saw my MD yesterday because of the return of the spasticity. She adjusted my Neurontin to my dose is now at 2400mg/day. That's the max dose. I started the increased dose yesterday at bedtime. I have to say it put me out pretty quickly, but I still followed my normal wake sleep cycle. Meaning little sleep and mostly awake. However, NO muscle spasms. Today I'm tired, but that could be related to the increased dosage. It will take a few days for my body to adjust. Now on to a much more pleasant topic: Petunia. She's awesome. We are really enjoying her and it's great to have a dog in the house again. She is very smart. She actually woke me up last night (I had fallen asleep on my recliner) to go outside and today she came and got me then went to the door to let me know. She slept secured in the family room and had NO accidents! Of course I realize that as an 11 week old puppy accidents will happen! We had her weighed today and she weighs 21.4 pounds. AT 11 WEEKS! Yikes shes going to be a BIG girl. We took her out in the neighborhood today to meet some of the neighbors. (We want her to be well socialized). She's doing well with the wheelchair and stays a healthy distance from it when we're walking. (Of course Mark is holding her leash until she is a bit bigger and has had some training). Hope everyone is doing well!

Christmas present....

My husband gave me the BEST Christmas gift yesterday. An 11 week old Oldde English Bulldogge. (Not a regular English Bulldog). She's just perfect. We've named her Petunia. She's into everything and has the "Bully" personality. Meaning she loves EVERYONE. Every time you leave the room and comes back she greats you like she hasn't seen you on a month and wonders where the heck you've been! She's great for the heart.

Friday, December 19, 2008

My friend is back....

good 'ol freaking muscle spasticity. It never really totally left, but it wasn't as severe or painful. I would watch the muscles in my legs and feet twitch and jump and my toes move all on their own. Then, on Wednesday I had a bad spasm in my left bicep. I mean a hold my breathe till I was blue, arm drawn up, cussed a blue streak spasm. Fortunately, it only lasted about 5 minutes (which felt like 5 hours) and hasn't returned (I'm knocking on my head). It's very rare for me to have spasticity in my arms, but it's ugly when I do. Since then, the spasticity in my legs and feet has returned in full force. PAINFULLY so. I can't figure out why. (Heck, don't we all wish we could figure out why we have flareups and all the other wonderful things we deal with)! I'm taking the Neurontin and Clonazapam without fail, I'm running my programs and doing everything I'm supposed to be doing. THIS is the most frustrating part, for me, with dealing with MS. The WHY'S. If I could figure out a trigger for the muscle spasms it sure would be something I'd avoid. Besides the pain the spasms can be immobilizing. Can't even attempt to stand with my feet contorted. When the spasms stop I'm afraid to move for fear another will start. It's enough to make one kinda grouchy!

Thursday, December 18, 2008

Enough snow!

Boy, did we get snow! Started on Sunday and pretty much finally stopped this morning. My poor husband is stuck in the valley as all the major highways he could take to get here are closed due to ice and snow. They have been closed for 2 days now! It is absolutely beautiful though. Everything is so crisp and clean. NOW it feels like Christmas! Today the skies are a beautiful blue. The high today was 35. Positively balmy!

This is the view from my front door. My husband had shoveled the front walk Tuesday before he left. What I found amazing is that even the kids weren't out playing in the snow today. Too cold!

Wednesday, December 17, 2008

Optic Neuritis and DTI

There was an interesting article published yesterday in Science Daily: The article discusses diffusion tensor imaging (DTI) and it's use in actually predicting the course of optical neuritis in MS. Pretty interesting reading.

Tuesday, December 16, 2008

It is what it is

Looks like this night has the potential to be another insomnia filled night. UGH. Of course, there is never anything good on TV on the nights you can't sleep. Thank goodness for Tivo. It also means I'll be surfing the net to see if I can find any more promising research information out there. It's hard to believe that Christmas is less than 10 days away. I'm all done with shopping thank goodness. Now it's all the wrapping etc. that's let to be done. Then traveling up north to be with some of the family. Hard to believe another year is almost done. Been a challenging one, but a joyful one as well. I've learned a lot about the ongoing MS research out there. Hopefully, we'll see some big strides in MS treatment over the next decade. I'd love to see an oral med on the market (as long as it had minimal side effects). I had having to stick myself with a needle three times a week. It wouldn't be so bad if I didn't feel so crummy the day after each injection. Tomorrow I'm just going to take it easy. I wasn't feeling so great yesterday with the MS. I was definitely having an "off" day. Balance was off and my fatigue level was high. Today wasn't much better. I didn't even answer my emails today, just forwarded a few "funnies". I "feel" fine. Just very tired. All part of the MS. At least I listen to my body now and when it's tired I don't try and fight it. It is what it is. If I find anything interesting as I google tonight, I'll post the info here tomorrow.

Other MS information Sources Links and contact Numbers

Information also is available from the following organizations:
Multiple Sclerosis Association of America706 Haddonfield Road Cherry Hill, NJ 08002 Tel: 856-488-4500 800-532-7667Fax: 856-661-9797 National, non-profit organization dedicated to enhancing the quality of life for those affected by multiple sclerosis. MSAA provides ongoing support and direct services to individuals with MS and their families and works to promote a greater understanding of the needs and challenges of those who face physical obstacles.
Multiple Sclerosis Foundation 6350 North Andrews Avenue Ft. Lauderdale, FL 33309-2130 Tel: 954-776-6805 888-MSFOCUS (673-6287)Fax: 954-351-0630 Dedicated to helping people with MS, the Multiple Sclerosis Foundation offers a wide array of free services including: national toll-free support, educational programs, home care services, support groups, assistive technology programs, publications, a comprehensive website, and more programs to improve the quality of life for those affected by MS.
Accelerated Cure Project for Multiple Sclerosis 300 Fifth Avenue Waltham, MA Tel: 781-487-0008Fax: 781-487-0009 National nonprofit organization dedicated to the creation and execution of a plan to cure MS by determining its causes. Developing a multi-disciplinary blood, tissue, and data bank.
National Multiple Sclerosis Society733 Third Avenue 3rd FloorNew York, NY 10017-3288 Tel: 212-986-3240 800-344-4867 (FIGHTMS) Fax: 212-986-7981Funds research, helps families stay together, provides accurate and up-to-date information, helps with employment issues, offers free counseling, runs self-help groups, advocates for people with disabilities, and provides referrals to medical professionals.
American Autoimmune Related Diseases Association 22100 Gratiot Avenue East pointe East Detroit, MI 48201-2227 Tel: 586-776-3900 800-598-4668 Fax: 586-776-3903 National organization that works to alleviate suffering and the socioeconomic impact of autoimmunity. Dedicated to the eradication of autoimmune diseases through fostering and facilitating collaboration in the areas of education, research, and patient services.
National Rehabilitation Information Center (NARIC)4200 Forbes Boulevard Suite 202 Lanham, MD Tel: 301-459-5900/301-459-5984 (TTY) 800-346-2742Fax: 301-562-2401
Clearinghouse on Disability Information Special Education & Rehabilitative Services Communications & Customer Service Team550 12th Street, SW, Rm. 5133Washington, DC 20202-2550 202-245-7307 202-205-5637 National Ataxia Foundation (NAF)2600 Fernbrook Lane North Suite 119Minneapolis, MN Tel: 763-553-0020Fax: 763-553-0167Encourages and supports research into the hereditary ataxia's, a group of chronic and progressive neurological disorders affecting coordination. Sponsors chapters and support groups throughout the U.S.A. and Canada. Publishes a quarterly newsletter and educational literature on the various forms of ataxia.
Well Spouse Association63 West Main Street Suite H Freehold, NJ Tel: 800-838-0879 732-577-8899Fax: 732-577-8644International non-profit organization whose mission is to provide emotional support to, raise consciousness about, and advocate for the spouses/partners of the chronically ill and/or disabled.

Monday, December 15, 2008

MS article in LA Times-Fingolimod-alemtuzumab-Rituximab

The Los Angeles Times has a great article in today's paper. Here is the online link:,0,7761919.story It contains some great information regarding new drugs on the horizon. If you find any other information or links. Let me know. I'll post them here.


Finally! Yipee! I woke this morning to big fat flakes falls on a ground that already had a good 2 inches on the ground! NOW it feels like Christmas time! Hubby is taking pictures that I'll post on here later :) No romping in the snow for me this year, so I'll be content to watch it fall from the warmth of my family room. Of course, there is a bit of sadness mixed in with the joy. Valor LOVED the snow. He would run around like a crazy dog, biting the snow, rolling in it and generally causing much laughter. So, I'll raise my coffee in a silent toast to Valor as I watch the snow fall. Then drive my cat, Maggie, crazy with her new laser light!

Sunday, December 14, 2008

Baking..put off for another day

Today was supposed to be the official opening day of my holiday baking season. That is, until hubby dripped cheese in the bottom of the oven cooking his pizza last night. Now, today is the official oven cleaning day. Fortunately I have a Kitchen Aide double oven with automatic cleaning, but it takes 3.5 hours! (Of course it does warm up the house nicely)! So....tomorrow will be opening day for baking. On the baking menu is pecan pie, custard pie and fruit tarts. I'll add other goodies as the week progresses. Hope your holiday baking is off to a better start than mine!

Saturday, December 13, 2008

FTY720 (fingolimod) Research information (Oral Drug)

This was forwarded to me via the MS Society. I wasnted to share it as I think it's great news. This means we could possibly see FDA approval for an ORAL drug soon!

December 12, 2008

Oral FTY720 (Fingolimod) Reduced Relapse Rate More Effectively Than Avonex in Initial Results of One-Year Study in Relapsing-Remitting MS

The experimental oral drug FTY720 (fingolimod, Novartis) reduced relapses significantly more than Avonex® (interferon beta-1a, Biogen Idec) in a one-year study involving 1,292 people with relapsing-remitting MS. Serious adverse events in the FTY720 group included two deaths from herpes infections and seven cases of localized skin cancer. These initial results are reported in a press release from Novartis, which notes that analysis of these data is ongoing and that two other large-scale, phase 3 trials of the drug are ongoing. The company expects to submit an application to the FDA for approval by the end of 2009.

Background: FTY720 binds to a docking site (sphingosine-1-phosphate receptor, or S1P receptor) on immune cells, including T cells and B cells, that have been implicated in causing nervous system damage in MS. The drug appears to induce immune cells to remain in lymph nodes, where they can do little harm, preventing them from migrating into the brain and spinal cord. Promising phase 2 study results were published by Ludwig Kappos, MD (University Hospital, Basel, Switzerland) and colleagues in The New England Journal of Medicine (2006;355(11):1124-1139).

This one-year, phase 3 study – also known as TRANSFORMS – is one of three studies of FTY720 in relapsing-remitting MS. The company says that it expects data from two other studies – FREEDOMS and FREEDOMS II (two-year, placebo-controlled, Phase III studies that are assessing the impact of FTY720 on reducing relapses and slowing the progression of disability) – to be available in 2009. Another study, INFORMS, is evaluating the effectiveness of this drug in primary-progressive MS.

This Study: Investigators worldwide recruited 1292 people with relapsing-remitting MS. Participants were randomly assigned to receive either one of two doses (.5 mg/day FTY720 or 1.25 mg/day FTY720), or Avonex (30 mcg/week injected intramuscularly) for 12 months. The study’s primary endpoint was to compare the effectiveness of treatments in reducing the relapse rate. Secondary endpoints included comparing the proportion of relapse-free patients, drug safety and tolerability, and disease activity as observed on MRI scans. There was no assessment of neurologic disability and no evaluation of efficacy beyond one year.

The company’s press release reports on the primary outcome and drug safety and tolerability. The annualized relapse rate in those taking the lower dose of FTY720 was 0.16, compared to 0.33 in those on Avonex (a comparative reduction of 52%). Those taking the higher dose of FTY720 experienced an annualized relapse rate of 0.20 (a reduction of 38% compared with Avonex). No statistically significant difference was seen between the two FTY720 doses.

Safety: The proportion of participants discontinuing treatment during the study was 10% in the FTY720 0.5 mg group, 15% in the FTY720 1.25 mg group, and 12% in the Avonex group.

Two deaths from herpes infections occurred in the group taking the higher dose of FTY720. Seven cases of localized skin cancer occurred in the FTY720 groups, including three melanomas, and one (squamous cell carcinoma) in the Avonex group. According to the company, all skin lesions were successfully removed. .Eight cases of macular edema (swelling of the center of the retina) were seen in the FTY720 groups and one in the Avonex group. The additional clinical studies underway should help clarify whether these events are related to the experimental treatment.

The most commonly reported adverse events were headache, nasal inflammation, and fatigue, which occurred in more than 10% of participants in all three groups. Influenza-like symptoms occurred in 4% of the FTY720 groups and in 37% of the Avonex group.

Conclusion: The company is continuing to analyze the data and plans both to report fully at a scientific meeting in 2009 and to submit an application for FDA approval by the end of 2009. “It is good to see this oral drug advance through the MS pipeline,” says John Richert, MD, executive vice president for research & clinical programs at the National MS Society. “ We are eager to see longer term safety and efficacy data that also include the effects of FTY720 on measures of disability.”

-- Research and Clinical Programs Department

Thursday, December 11, 2008

Web Site Found

I'm always surfing the internet to find the latest information regarding research and treatment of MS. I stumbled on this site this afternoon: This site is a list of all know clinical trials recruiting, ongoing or closed. The site isn't dedicated just to MS. It's run by the U.S. National Instutes of Health. I found it pretty informative. I'll also be adding a direct link to the site to my link column.

Snow watch

Geesh even South Eastern Texas has had snow! Amazing. We're in the mountains at 4000 feet and not a flurry has arrived. It doesn't seem like the Christmas season without at least a light snow! It's been cold enough to snow with gray skies thrown in to give false hope. Still waiting. . I love the cool temperatures of this time of year. It's so much easier on the MS. No worries about heat related flare-ups. Of course, with the holidays stress management becomes even more important. I fully intend to start baking next week. I'll be careful not to push too hard and limit my baking to the morning hours. That way I'll be conserving my energy levels. Of course, then the challenge becomes NOT eating what I bake in the afternoon! Our round of Christmas parties start tomorrow evening. I would love to have a gathering here, but I don't think my energy level will allow me too. Not this year anyway. While I am continuing to see improvement using the protocols, it seems my day to day energy level is taking it's time bouncing back. My balance is better. Not perfect, but better. My body still requires the protocols being run every 3 hours to keep pain under control which can be a challenge when your trying to plan your daily activities. (I'm running them as I type). What keeps me from getting frustrated is looking back to where I was June-November and seeing where I am now.

Wednesday, December 10, 2008

What is this world coming to?

I've deliberately kept politics off my blog. I don't discuss world events here either. I wanted to keep the blog simple. Just about MS and my journey with it. However, the more I watch the news the more disgusted I find myself becoming. What the heck is wrong with us as a human race? Some of us believe our religion makes us better that others, which gives us the right to then MURDER those of different faiths and races. CEO's believe that they are entitled to bailout money from the government and be able to keep their jobs. While it is their poor management decisions that drove the companies they were leading into bankruptcy and jeopardize hundreds of thousands of jobs. (Wish I could get a bail out. I don't see my local Congressman jumping in to help me with my student loans and other debt now that I'm unable to work)! Others believe they have the right to take someone else's property, just because it's there. Kids believe that taking a gun to school and killing those who make fun if them, or they simply don't like them is the right way to deal with their problems. Something is definitely wrong with the world. Perhaps the biggest problem is why we tolerate all this. We've become so "Politically correct" and afraid of offending that we turn a blind eye to the changes in society that brought us to where we are today. Now all we do is "whine" about things, but no one has the good old fashioned "gumption" to stand up and SPEAK up. Heck look at all the voters who cast their votes for Senators, Congressmen, Mayors and Governors in recent years who were indicted for corruption or under investigation for other criminal activity DURING the elections! We allowed discipline to be taken out of the classroom, we took away the parents right to discipline their children (there is a HUGE difference between discipline and abuse). I remember when I was a kid, if a neighbor saw us misbehaving they would yell at us AND rat us out to our parents. Geesh. We'd get into trouble TWICE. Now the neighbors are afraid to say anything because of the parental mindset of "who are you to correct my child". (Heck the PARENTS don't even correct them). Doesn't matter that your kid was throwing rocks at passing cars and I told him/her to knock it off. I'm the bad guy. I think I'm going to turn my TV off for the rest of the year! Tomorrow..back to blogging about MS.

Tuesday, December 09, 2008

Rebif and getting ready for Christmas

Just when I think my body is adjusting to the Rebif (is that even possible??) WHAM. Last night was injection night. No different than any other injection night. Took 800mg of IBU at noon and then again when I injected. For some reason I had high fevers all night and my body hurt so badly that even my skin hurt. Needless to say sleep didn't happen. Thankfully, with the exception of a headache, I was back to "normal" by noon. I don't have any protocols that would help and I tried several just to see if they would. I think they helped a bit with some of the pain, but not much. With all the research you would think they could come up with a treatment for MS in which the side effects aren't so bad. Of course, I realize that some people tolerate this medication with no problem. Wish I was one of them. At least I don't have to inject tonight, so after running my programs I should sleep. It's perfect sleeping weather here. It's down to the low 30's at night. I keep waiting for snow! We have a shot at getting some Sunday or Monday. If we do, it will most likely be a dusting and gone in a day, but it sure helps usher in the Christmas spirit. I enjoy seeing the decorating all the neighbors are doing. Some are really extravagant! They have large blown up Santa's, Snow men etc. Not to mention all the lights. It's beautiful at night. We're not putting lights up this year. We have our tree in front of the living room window and I have an animated deer and snowman we'll put out this weekend. I've been slowly collecting my "village" for the inside. I really enjoy adding to it every year. Of course, as it grows the challenge become where to put it all every year! I plan to start baking next week if I have the stamina. The protocols have really helped boost my morning energy, so I anticipate doing all my baking in the morning. I started years ago giving homemade baked goods to my neighbors for Christmas. Brownies anyone?

Monday, December 08, 2008

Christmas Season arrived at my house

The Christmas season has arrived at our house. We put our tree up and decorated it with ribbon, bows, sparkly ornaments and of course lights are on the tree as well. The angel at the top (I've had her for years) is too tall, so she will be replaced this year with something else. I started a village collection a few years ago and have added each year. This time I found a piece that is gorgeous. (BIG though). It's a house on a hill with a train that goes through a tunnel in the hill and a river that flows down the hill and around the front. It all lights up, including the river. There is also a snow man, bridge and a few people on it. (Told you it was big). I picked it because of the moving train. My husband LOVES trains and I knew he would like this piece. (He does). We ended the night drinking brandy in Egg Nog (YUM). Made me miss my dad though :( Dad and I had a tradition of drinking Egg Nog together. That's the hard part of family being so far away. Maybe next year we'll be able to enjoy it together. Next weekend we'll start decorating the outside of the house. No snow here yet. It won't really feel like Christmas until it does. So, I have my fingers crossed. Most of my shopping is done. Surprisingly none of my shopping so far has been done on line. Much to Marks dismay as he has to go everywhere with me. Kinda hard to shop alone in the chair. I only have two more people to shop for then I'm done. Next is shipping!

Sunday, December 07, 2008

Decisions, Decisions

As those of you who have been following my blog know, this has been a challenging year for me with the MS. Fortunately, I seem to be over the worst of it....for now, and on the road to healing. Trying to spend more time out of the chair and using the walker, although I doubt I'll ever be chair free. As life teaches us, nothing comes without a price. Whether that price is monetary when we shell out our hard earned cash for the new TV we want or the emotional and physical price we pay when we are handed a health challenge. I've learned that the most important part isn't necessarily how we deal with the hardship, it's how we cope with the cost. I got through the worst that MS dealt me this year by faith, taking everything one step at a time and the support of my family and friends. I couldn't have done it without my faith and all their love and support. I became proactive with my health and learned about other treatments available out there. I made decisions on what to do, and what not to do. I tried not to take my frustrations out on my loved ones and fought to keep my sense of humor even when very little was funny. I wasn't always successful, but I tried. Now, for some reason I feel lost. Perhaps I'm just tired and the year just kicked my butt. Maybe it's just the holidays and the "holiday blues". Maybe I'm just feeling sorry for myself. I certainly don't have the answers. Right now I'm just trying to hold it all together. Trying to make sense of all the whys. Why MS? Why Me? Why not Me? I want my life back. I want to dance like I did in April. I want uncomplicated. Not easy, just uncomplicated. What decisions do I need to make to get there? Do I really have any control anyway? Do the decisions I make really matter in the grand scheme of things? Is all we can really expect out of life is just to do the best we can, BE the best we can and then just hope things work out for the best?

Saturday, December 06, 2008

Good day...bad day. Is there really much of a difference?

Seems that each day's mindset can turn on a dime. I spent the morning cuddled up with my new "don't mess with me blankie" and the afternoon cooking Thanksgiving dinner. Yes, that's right Thanksgiving dinner. Since we were away for the holiday hubby decided he wanted a "traditional" Thanksgiving dinner. So, I cooked. Turkey, mashed potatoes and homemade gravy, stuffing and of course, the required green been casserole. Cooking actually made me feel better. (I love to cook). However, now that the cooking is over I'm back to hugging the "don't mess with me blankie" as I'm running one of my protocols. Seems that running protocols is about the only productive thing I seem to be able to do. Perhaps I'm just caught in a cycle of feeling sorry for myself. Perhaps I'm just grieving over Valor. Whatever it is, it sucks. I found myself automatically putting the turkey gizzards aside for Valor's dinner. I wonder how long it takes before I stop automatically doing things for him. A month? 6 months? A year? Personally, I'll be glad when this year is over and I can look forward to happy occasions. The highs of this year have been awesome and the lows simply devastating. Right now I feel like a child tugging on Gods pants leg...asking him not to forget that I'm down here. So, good day or bad day...seems that they are all pretty much the same.

Friday, December 05, 2008

One of "THOSE" Days.

Did you ever have one of those days where you just need comfort? You don't know why or even what kind of comfort you need. You just know you need it? That's the kind of day I'm having. I'm simply out of sorts. My hip hurts, but otherwise I feel fine. I'm simply out of sorts. Part of it may be that last night was shot night which always leads to a "not so great" day. So, I think I'm just going to curl up with my new Nap blanket (thanks Mom), Maggie and my Kindle, run my protocols every three hours and have a down day.

Thursday, December 04, 2008

Baby steps

It's been a good day today. My energy level in the morning was great. Of course, it faded rapidly in the afternoon. I used my walker the majority of the day in an attempt to stay out of the chair. I'm still wobbly and need the chair for anything that requires distances longer than my hallway, but it's a start. So, I took it easy this afternoon. Caught up on some of my Tivo (I love Greys Anatomy) and just vegged out after the afternoon bible study group. (I host at my house once a week). It's shot night tonight, (UGH). Thankfully the protocols have been pretty helpful with some of the side effects. If I run the protocols first thing in the morning the body aches are much easier to tolerate and not as severe. I am so envious of the folks that don't have any side effects with their Rebif injections. I usually feel like I've been run over by a semi, twice, the next day. Not pleasant. Until this summer I often wondered if the cure was worse than the disease. Now, I'd be afraid NOT to take the Rebif, no matter how challenging the side effects are. I'm running my MS protocol now, cuddled up with my cat Maggie in bed. At the end of this protocol, I'll run my sleep protocol and hopefully get a good nights sleep. My hip pain and insomnia are the two things I continue to really battle with. They are both a little better, but have a long way to go. However, I am thrilled to be able to use the walker again, even if it is just for short distances. A little progress is better than none at all! Like Dr. Rhodes said, "Baby steps".

Wednesday, December 03, 2008

Catching up

I have so much catching up to do as it's been a few days since I blogged. Actually, things are going pretty darn well. I'm almost afraid to type that. Seems that every time things seems to be going well and I acknowledge that, something happens. However, right now I choose to revel in the fact that my MS seems to be in remission and I'm seeing improvement in my functioning. I attribute my improvement to the treatments I take with the STS RX machine. Of course, I am diligent in running my protocols. In fact, I'm hooked up now as I type. I have noticed two significant changes since my return from Texas. 1. My morning energy level is wonderful. I wake on my own by 6:30 (which is amazing since I have NEVER been a morning person) and I have tons of energy. EVERY morning. My high energy level lasts until early afternoon, then it starts petering out. 2. I've noticed an improvement in my balance. Enough of an improvement that I'm giving serious thought to getting out of the chair and using the walker. Dr. Rhodes said it would be a gradual process, baby steps. He was right. At times, I wondered if the treatments were going to help with anything besides pain. The results I'm seeing motivates me to keep going forward. The hardest part of the treatments is staying still. Being hooked up to the electrodes is, for obvious reasons, confining. If there is nothing on TV and I don't feel like reading it can be tedious. Compared to the side effects of Rebif , boredom as a side effect is a piece of cake!!! The only challenge I've had lately is a return of the muscle spasticity. OUCH. It hasn't been too bad, but bad enough to remind me how bad it HAS been in the past. I've been pretty successful at managing my stress level as well. Which, as anyone with MS knows, is vital. If it's not my problem, I don't take it on. It's that simple. Life provides us each with enough of our own problems and stressors without taking on someone else's. I think that's a skill we could all stand to learn. So, basically, so far so good. I'm thrilled with the progress I'm making and hope it continues.